Saturday, December 31, 2011

What you may not know about calcium

It's funny the little things you think about when you are laid up in bed. Today I was thinking about some of the questions and concerns regarding muscles I've seen in the group. If you haven't seen my video on why we get muscle spasms you might want to watch that first.

Ok that being said I want to tell you about calcium. You have heard that calcium is a very important part of your diet. Growing up your mom always said it was good for your bones. What you might not know is that it is also important for your muscles. One of the components to helping your muscle contract is calcium. From running a marathon to just changing the channel on the remote you are using calcium to help move those muscles. Even your heart muscle uses calcium. Think of all the muscles involved in one little movement. 

Now knowing how much your body relies on calcium to work answer this question. If  you are not getting the recommended calcium in your diet everyday where is it coming from? What is supplying your muscles with the calcium needed to move? With 99% of your bodies calcium being stored in your bones and 1% in your blood you bet it'll be coming from your bones. That can lead to frail bones that break easily. Add to that the fact that you have RA and doesn't that just make your joints hurt thinking about it? 

If you do take in the recommended amount of calcium which is about 1,000mg/day your muscles will use the calcium you supply that ends up in your blood stream and that will be enough. Your muscles won't look to your bones for it's supply. So like your mama said "drink your milk"!

Friday, December 23, 2011

You have a choice

This time last year was so hard. I was depressed. I had gone through 3 port surgeries in a month because of infections and failed ports. I felt like a human pin cushion getting poked 2-3 times a day. I had a hole in my chest carved out that looked like a bullet hole. I spent my Thanksgiving with my visiting nurse unpacking and packing the wound. One port surgery wasn't so bad but 3 in a month, in my chest, that was painful.

I was convinced at 36 that was how my life would be forever.  That's when your mind starts playing tricks on you.  Why should I expect my husband to stay around? I'm not who he married. We met playing street ball against each other in the park. I couldn't even walk to the court from the knee pain. Julia, I was convinced, was going to resent me. Missing out on a home, a yard, and other things because of this disease. My friends, I knew them through Facebook and text messages. What could I offer them? I couldn't show them a good time.

I had no hope of a brighter tomorrow. Let me tell you, that's a bitter lonely place to be.  Looking back I wouldn't change a thing. I would do it all again. What I'm realizing is in my mind I had accepted my RA to that point. I hadn't in my heart. My heart was mourning. My heart was angry. My heart was exhausted from staying strong. I was a robot. Just going though the motions.

At the end of the summer my life changed. I met Peggy. She was a ray of sunshine. She gave me hope. She was newly diagnosed. I found my strength again. She needed me. She was like a deer in headlights so scared and unsure of the path ahead. I rose to the challenge and guided her. Amazingly that last piece of hatred in my heart healed.

Suddenly, almost overnight, I changed. I found my road again. I knew my way. Now with a Facebook support group 350 strong and growing I feel fulfilled.  We trademarked a logo and the name of the group. We are raising awareness all over the world.  It was so hard for whomever in the last generation that had AIDS. No one knew what it was. They always had to explain. That's us now. The next generation, they will know RA like we now know AIDS. That's a promise.

RA can be horrid. RA can be rewarding. It's your choice. Find the answer in your heart

Wednesday, December 7, 2011

A look through different eyes III

For those of you that missed my first letter click here.
For those of you that missed my second letter click here.

Blog post from Peggy Piscopo

Brigid Is My RABF! You All Need To Get One!

I was diagnosed in July with RA, and then I found Brigid a week later;  or should I say she found me.  It was a late late night, and I was looking on FB for support chat groups on RA and she chatted me up.  She says she never ever does that...and I believe her.  We chatted for so long...our hands started to hurt and we ended up talking on the phone until 4am her time.  There hasn't been a day we haven't made some form of contact.  Let me tell you a little bit about her...

She has a great blog... My Rheumatoid Arthritis Journey.  She is a great writer.  How can two people who have never met create so much good for people with RA?  How can two people be so alike?  We think the same!  We created Rheumatoid Arthritis Squeaky Joints on Facebook.  It is a support group with people that RA called Squeaky Joints.  It is closed and private and it is thriving with love, support, and laughter!  If you want to join click the link and we will accept you as a new Squeaker.  We have created such a bond with each other and with our members.  We love them all, and have a deep friendship.  I will finally meet her in May at her Arthritis Walk in CT .  I am really excited to see her.

She had guided me through the dark moments of this diagnosis.  She has been the light at the end of the tunnel.  She gives me the strength to inject myself every week with scary biologics and cancer medications.  I know that we have supported each other a great deal...and will always continue to do so.  I know in my heart and soul I created the timing for Brigid to come into my life.  I know she feels the same way...  our paths finally met.  With Squeaky Joints coming together we are now able to connect others who are in need of friendship.

Squeaky Joints is the name of her Arthritis Walk Team... and so we used that name for our Support Group.  We are in the process of growing it into the place of love, support and understanding it should be.  I just thank my lucky stars and God above..and whomever was responsible for our friendship.  Unfortunately you can't find a Brigid doll at your local retail store.  You can put in some karma pennies and find a doll in your near future.

Brigid I know you will read this ...  Just know I only have a few close friends in my circle whom I feel safe with you..  and you are one of them.  You are family to me.  I always wanted a sister I could have no drama with.. and you are now holding that position.  I love you.

Friday, December 2, 2011

Traveling Tips

It's that time of year. Time to head home for the holidays. If you have RA that might make you cringe just thinking about it. Well never mind, maybe you can still dread it and not have RA. Um oops. Hey family! If your reading this can't wait to see you on the holidays, Yay!

I'm gonna start with airplane travel. This summer I traveled alone from CT to FL with luggage and an 8 year old. It was a piece of cake! I just used the resources offered to me. I'm not going to say the specific airline because all offer this service. When calling to make the reservation I mentioned that I was disabled and I have a wheelchair. For those who don't have one the airport will provide one for you. Don't bother waiting for those stupid carts because you won't get the same perks that I am about to tell you. Also mention you will be needing assistance on any connecting flights and the return flights. They actually tag your account in the system so they are aware of everything on your date of travel. They waived the booking fee and upgraded at no charge but that part is per airline.

The airline will have someone on staff to meet you curbside. You just tell them what time you will be there. The staff member takes your luggage out of the car and wheels you and your luggage to the airline service desk. (psst...I got to cut in line!) They check the bags you want checked, then off you go.

You see that long security line ahead? Bypass! You are wheeled to a side line and checked through security. You will have to stand to walk through the metal detector but that's it. They also have to wipe down the chair quick to make sure there aren't any explosive powders on it.

Next stop your terminal. Here they hand you over to a flight attendant and they are made aware that you are here and ready to go. When it's time to board you are the first to go. They wheel you all the way down to the plane and drop you off. If you have a personal chair they check it with the carriages. If you don't they just bring it right back up to the airport. The flight attendant will help you to your seat and place all items above in the bins for you. They will also get them for you during the flight if you need them. Try to also get up and move around every hour to prevent blood clots and bone stiffness.

Once you reach your destination (unfortunately you are the last to get off) your chair, or a chair, will be waiting at the planes door to escort you to baggage claim. Once there you will get help with your luggage and be escorted to your party or car/shuttle service waiting for you. Now think about this timeline I gave you. We are talking waiting at the first airport, the flight, and the second airport. Over a few hours you may have stood or walked 10 minutes total over a few hours! How stress free its that?

UPDATE!!!: There is a good point brought up in the comments below about medication. These are TSA guidelines.

  1. All prescription medication must be labeled with the original prescription label in the vial that the pharmacy provided for you. A side note it is illegal to have prescription labels on you at any time (not just in the airport) that has someone elses name on it. Unless you are that persons caregiver you can be arrested and charged with drug possession. All pill bottles must fit in a QUART size zip lock see through bag. If all your bottles don't fit you need to check them.
  2. Injectable medications and those needing refrigeration can be carried on to the plane. You must declare them at the security checkpoint and provide a note from the doctor saying yes this medication needs to stay with you. This medication CAN NOT be x-rayed and can be carried on in a small cooler. Again make sure prescription label is on this medication showing your name. If you need one because you threw the box out your pharmacy can print you a new one. 

If you can it would be best to be a passenger rather than the driver. Not having to be aware and drive defensively will keep your body's stress level low and your mind more rested.

Bring a pillow with you. Pillows will help ease the stress on your joints. You can position them to support you where you need it.

Wear comfortable shoes. Nothing is worse than taking your shoes off because they hurt and not being to get them on when you are stopping to take a pee break.

Stop the car every hour at the least. You need to get out and stretch to prevent joints stiffening up and blood clots.

Pack a bag full of your comfort items, an iPod with soothing music, anti nausea medication, wash cloth, cold water, etc. Items that will soothe you if you start to feel sick.

One thing I also do is purchase my daughter a new coloring book, or new crayons to keep her busy. Kids love getting new things and it usually will work to get a bit of quiet time.

Depending on the station you use you might be able to get assistance to the bus/train. Call and ask for the destination trip and your return trip.

Same tips apply as the car. Try to get up and walk the aisle and stretch. Bring pillows and other comfort items. Wear comfortable footwear.

I hope these travel tips have helped you and inspired you to take your RA by the bull horns, say FURA, and travel wherever you may. If you have any to add please feel free to comment below.